What Makes It A Good Day?

I am not a lazy person, I never have been. It's not in my nature to be still for long. My preference has always been to keep moving, doing and achieving.  Constantly writing page long lists and furiously crossing items off one after another after another.  The more items crossed off, the better the day. My natural inclination is to be busy and to fill every moment in a day until it's time to sleep. And having moved, done and achieved a lot then to sleep soundly before waking up the next morning ready to do it all again. That was what a good day looked like to me.

But that was then. That was before anxiety and depression. Before chronic insomnia. That was before the ongoing fall-out from intensive cancer treatment. Before adrenal fatigue and chronic pain. That was before.

Now a good day looks very different to me. A good day is one that doesn't involve taking pain medication simply to be able to get out of bed. On a good day I feed my family and my animals, get my son to and from the school bus and maybe cross one additional thing off my list. That list, that page of writing, covers a span of a week or more now, not just a single day.  Now a good day is one without tears of anger or frustration and without anxiety.

I understand that it could be easy for someone else to see my stillness, my lack of activity or achievement, and assume that I'm a lazy person. Even those closest to me don't see the real struggle, because I always try to stay positive and keep smiling. I don't complain often, at least I try my best not to, because I know how lucky I am to still be here, sleepless nights and chronic pain aside. It's a huge mental shift to go from "Wonder Woman" constantly achieving to "Mrs Average"(or is that "Mrs Below Average"?) just getting through the day. To go from over-achiever to barely-achiever. 

The best piece of advice I was given when I started my cancer journey was to "learn to embrace the new you". Simple huh? It really is great advice and although it sounds simple it's actually incredibly difficult to do. What it comes down to, I think, is finding peace with those limitations I can't remove. It's about accepting that I can no longer do all the things I was used to doing myself and most importantly accepting help from others so those things can still get done even if not by me. It is incredibly difficult to do but very slowly I am beginning to understand my limitations. I think I get better at it every year. 

I'm not a lazy person. What I am is a survivor finding and trying to accept "the new me". Finding isn't so hard, it's accepting that's still a work in progress.

The Silence of the Dying

Before I start I just want to emphasise that this post is NOT about me. Sure I use myself and my experiences to highlight some things but this post is an attempt to bring more honesty to relationships around chronic/terminal illness.

One of my favourite Australian authors, Sara Douglass, died from cancer in 2011 just a month before I started my cancer journey. Yesterday I came across a piece she wrote about the pressure society puts on those who are terminally or chronically ill to make the best of it, think positive, keep smiling and other such platitudes. It's an issue I've wrestled with since my journey began. If you're interested in Sara's piece you can find it at 
http://www.saradouglassworlds.com/the-silence-of-the-dying/ 
I hope you will take the time to read it.

There is a lot in the discussion that rings true to me. A line which really jumps out is "...  too often, it is up to the sick and the dying to comfort the well and the un-dying". YES!  It sounds bizarre but I've been there. I am still there to some degree. 

I spent the almost 12 months of my cancer treatment with a fake smile pretty much glued in place. I let that smile slip once and it resulted in being unfriended and blocked on Facebook by a "friend" (one of my inner circle at the time). Nobody really wants to know the truth about how horrific cancer and it's treatment is. Even my oncologist said to me on more than one occasion "let me worry about the cancer, just get on with your life". As if I could forget what was happening and go back to normal. 

And now that it seems as though I might be beating the awful odds I was initially given I'm not allowed to feel anxious anymore. Not allowed to be scared about the future. The reality is that the Big C could strike again at any time. Every six months when I stress about the upcoming scans and bloods I'm told not to worry, that everything will be okay, over and over. It makes me want to scream. Almost nobody wants to sit with me, even briefly, in my place of anxiety and fear. Because that's uncomfortable. But that's what I need.

Another point that Sara makes is: "People also don’t know how to help the sick and dying". This is very relevant just now as I try to determine how I can help a class mate from high school who has recently received a terminal diagnosis. I know what I needed from my friends and family when I was unwell. I needed practical help and honest conversations. I needed friends who were willing to let me speak the truth about how sucky my life had become. Whilst I did get that from some friends it wasn't always the case. The longer I was sick the more invisible I became and the more life receded. Some people stayed away because they were uncomfortable and then later there was the inevitable "but you know I was thinking about you all the time". Um no. No I don't know that at all.

The purpose of this post is to ask you all to step outside of your comfort zone for the sake of your chronically or terminally ill family or friends. While flowers may be lovely, a few hours of your time is absolutely invaluable. Cook and deliver a meal, pick up some groceries, take the kids for a few hours, clean the bathroom but more than anything else LISTEN and BE PRESENT. 

The Longest Year

Wow it's been almost a whole year since my last blog post. It's been a very long and very difficult year. And I haven't really dealt with it in a way I can be proud of. But I survived it and here I am out the other side and finally finding the right headspace to go forward with my journey.

So why was it such a hard year? Well for starters I miss my family and friends in the west. More than I ever imagined was possible. There is so much I took for granted over there that I simply don't have here. Some I will regain in time, but some I need to accept is firmly in the past. I need to accept that and move forward. That's a tough thing to do.

Also there is the ongoing challenge of settling in to a new home and hobby farm. There has been so much work done to make our life easier here but there is even more still to come. The constant battle to possum and beagle proof garden beds, getting the chicken pen finished and fixing fences for the goats. Sigh. So much work ahead and my energy reserves are very low.

But most significantly the past year has been difficult due to my ongoing cancer journey. Unless you've been through it, it's impossible to comprehend the amount of stress the need for constant vigilance causes. Last year I was tested for no less than six different types of cancer. That's an average of one every two months. And it's not just the testing that is a strain but even more so the waiting. Waiting for the tests to be done and then waiting for the results. Remember these tests are ordered in response to symptoms, not just because they seem like a good idea. Imagine you experience pain in your shin bones or shoulder blades? Your GP will probably tell you to try to rest them and see if the pain continues. Not me. I get tested for bone disease. Should you experience stomach upsets and bloating your GP might tell you to avoid certain foods and see how you feel. Not me, I am admitted to hospital to have biopsies taken under sedation. Irregular and painful cycle? Another trip to hospital for biopsies under general anaesthetic. Blood tests, bowel screening, more scans. The constant ups and downs are exhausting. Eventually my body decided to stay in a heightened state of alert rather than ride the rollercoaster. Bam!  Adrenal fatigue.

So why am I finally writing a blog post now? Why tonight? A few reasons really, but one main reason.  Today was scan day. And even though I was dreading what the doctors might find I came through with flying colours. Stunned but so relieved. I can't even begin to express how I feel tonight compared to this morning. And getting the good news was different today. Usually I consider it a win for another six months. But somehow today feels more final for me. I am actually starting to believe that maybe the monster might not eat me after all. That perhaps I am doing enough to stay out of it's reach. That it's time to start believing all my family and friends who tell me it's going to be ok. I am finally starting to believe that I'm a survivor! Or should that be a thriver?

Flipping cancer the bird!!!

A Roller Coaster Ride.

Life is tough.

Everyone has a fight to fight or lessons to learn.

I have battled through some really difficult times in order to still be sitting here today. As have many (if not all) of my friends.  I can't speak for anyone else. But for me, even though I have struggled too, life was never as tough as it is today. Not until cancer entered the equation. Cancer is the unknown, the mystery box. Even three and a half years post-diagnosis, after all the treatment and testing, I still can't relax.  I thought I could but it turns out I can't. And probably never will.

The thing about being a cancer survivor is knowing that the journey is NEVER over.  Every new ache or fresh symptom creates an alert and is followed by yet another battery of tests to make sure it's not caused by cancer.  That's where I am again, in the middle of another bunch of tests and scans intended to rule out the big C.

You might think that all this testing and ruling out is a good thing. And perhaps in some ways it is, but more than anything it is physically and emotionally(and financially) exhausting. Nobody can really understand that unless they are on a similar journey.  Don't misunderstand me, I'm grateful that most of my friends can't fully understand and I truly hope they never do.

Six weeks ago I was feeling very anxious in the lead up to my regular annual scans.I had nearly two weeks of feeling positive and relaxed after I saw my oncologist and then last week I saw my GP. Before I knew it I was having more blood taken and being booked into hospital for more tests.

These constant shifts back to anxiety are a form of torture I'm sure. I can't relax. I exist in a highly alert state ready to fight or flee at a moment's notice. I don't sleep well, waking at every tiny sound. I wake feeling fatigued. I go to bed feeling anxious. And like riding a roller coaster I get off feeling like a wrung out dish cloth.

Being diagnosed with cancer is just like hopping onto a roller coaster for life. And just like being on a roller coaster there are some times when I just close my eyes and pray to get off.

Not today though.  Today I am continuing my fight, searching for answers and trying to make this day (and every single day that follows) count.  I hope  as you read this you don't think that I'm feeling sorry for myself in anyway, I'm not. Not at all. I AM feeling tired(exhausted), sore and afraid but also very grateful to be alive and able to feel tired, sore and afraid.

Love and light.

Beating The Odds?

Do you ever feel your mortality?  Do you ever consider that you may not see your children grow up or see them marry? Have you considered that you may never be a grandparent?  I hope not.

Three years ago I considered myself invincible.  I thought of myself as still young with so much life ahead of me. I took a lot for granted.  I had already survived overwhelming grief, the loss of a parent, the loss of my innocence, the loss of my first love and the almost total destruction of my second marriage.  I had survived a complete emotional breakdown, years of severe recurring depression and anxiety, and I even survived a moment of sheer desperation when I swallowed all the tablets in my bedside table.

But it was discovering the monster lurking within my own body that totally undid me.  Suddenly I was no longer invincible or immortal. Suddenly I was fighting for my life. I was feeling pretty healthy at the time but they told me I was actually very sick. And for the next 18 months I felt incredibly sick as I tried to get well. In order to cure me the doctors half killed me. Even now, three years into my journey, I am not as "healthy" as I was before my treatment. And you wonder why I get angry? The monster took so much from me.

And no matter how many people tell me not to dwell on it, or how often they tell me, I still have the scars to remind me daily of the fact that I came close enough to stare death in the face. And it's not pretty.

Even now I don't know whether my odds are improving or getting worse. Three years ago I was told that my chance of a recurrence was 80% in 5 years.  80% in 5 years!!!  Huge huh?  So three years along, having just completed another swag of tests and scans that came back negative, should I be relieved that I have survived this long without a recurrence OR should I be concerned that as I get closer to the magical 5 year mark the risk of them discovering something sinister increases? Eighty percent is a big number. It messes with my head.

I feel my mortality keenly these days. I consider every day a gift. I celebrate everything, and sometimes I celebrate nothing. I use the good china, I leave dirty dishes in the sink and I make time to get ink on my fingers and glitter on my face.  I desperately hope to see Ash grow up and marry and make me a grandmother. I tell my family and friends that I love them whenever possible.  I watch the sunrise and the sunset as often as I can.

And every single day I wonder if I could possibly be lucky enough to be one of the 20%.

Loving myself first

My first love was hard. There's no other way to describe it. Actually all my relationship until now have been hard, sometimes excruciating. And it has taken all these years to figure out what the problem was with every single one of them.  There was one thing they all had in common. One failing. And it was me. Or rather my opinion of me.

Now I'm not talking about relationships like holding hands with cute little Jamie with his blonde curls and glasses in grade 1.  Nor am I talking about my first serious crush. The one I cried over every time I had a few underage drinks with my friends. The one I swore I would never get over even if I lived to be a hundred, with his olive skin, dark eyes and crooked smile. Some of you were there with me and are laughing as you remember those days!

When I talk about my first love I am going right back to my mid teens.  I met him just before my sixteenth birthday and fell head over heels. He was cute (I mean cute in the way a teenage girl refers to good looking guys as cute, not Jamie in grade 1 cute).  He was also smart, funny and charming. And he made me feel special. He had "presence" - you could never overlook him in a room full of people. But I digress.

Over the years I have made some very bad decisions and accepted being treated poorly as a matter of course. I was insecure. I lacked confidence and had very low self esteem which left me open to physical and emotional abuse in my relationships. I honestly didn't believe that I deserved any better. The patterns repeated themselves over and over and I let them. Why didn't I walk away you ask? Because my first experience of love set me up to expect heartbreak.  After that I was broken.

We were so young.  He was restless and I was idealistic.  Over a period of about 4 years he broke my heart a half dozen times, disappearing out of my life without warning and then reappearing the same way.  When THE phone call came I would drop everything (and everyone) to see him for whatever brief time we had and then when the phone went silent I would continue on with my life broken hearted again. I couldn't understand what I was doing wrong but I began to expect the heartbreak and eventually to believe that I deserved it.

Relationship after relationship I allowed these patterns to continue - a failed engagement, a failed marriage and a series of toxic relationships.  Then 8 years into my second marriage I had a complete emotional breakdown and the pattern was finally broken. It took a long time and lots of hard work to finally heal but it was a start.

It took 42 years for me to love myself enough that I could believe and accept that I was worthy of love from others.


Now that I no longer expect to be hurt or believe that I am unworthy I am able to give love with all my heart.  I feel safe and secure.  I feel loved.  This has allowed my husband and I to build the kind of relationship I used to believe only existed in fairy tales. Now I am head over heels in love with my best friend.  Now I can't even begin to imagine a life where we aren't together, in love and blissfully happy.

It might take years, or even a lifetime, but trust me when I tell you that dreams most certainly can and DO come true. But it takes work!!!

A Violent Chapter

I was young and afraid, so I let it continue far longer than I should have. I met him when I was 18, living alone in Perth, and going through some huge emotional changes in my life. He was 26 and to a young, naive and impressionable girl with no self-confidence he seemed to have it all going for him. And so of course I was quietly thrilled when he followed me back from Perth to Hobart. An 18 year old had no business moving in with a 26 year old man, but I did it anyway. We even got engaged!! And then he started to show his true colours.

Not that there hadn't been clues, his older brother had served jail time for violent behaviour and his father disciplined both his sons with violence. But I dismissed all the clues or explained them away because as insecure as I was I thought I needed to be with someone and if it wasn't him maybe no-one else would want to be with me. Unfortunately the violent reality was starting to hit home. I lived in constant fear of making him angry and what he would do.

And so I sat for hours this one last night, terrified, with my back pressed against our bedroom door hoping he wouldn't be able to get in. My right eye was already swelling shut and both forearms were throbbing and I knew they would be badly bruised. I was convinced that if he got through the door I would end up in hospital or worse.  So I sat there and listened to him yelling, threatening what he would do to me if I didn't open the door, throwing things, punching through plaster board and even through one internal door.

The front door slammed and suddenly it was quiet. But I sat for another half an hour too scared to move in case he was waiting to push the door open as soon as I did.  Eventually I mustered the courage to move and cracked the door open. No sign of him in the unit.  I ran to the phone and called my dad to come and get me as fast as he could. Within an hour we had my belongings packed into his car and were heading back home. Thankfully there had been no sign of my violent fiancé as we left.

The next day the phone calls to my parents house started. Abusive calls accusing them of turning me against him. Denying the violent behaviour. Professing undying love!  Thank goodness I had finally learned my lesson and his words fell on deaf ears.

It didn't end there. I lived in constant fear. He would stalk me near my workplace. Six months later I had moved into my own place and would find him waiting outside for me to get home from work. Or he would wait for me at my car. It got so bad that work colleagues started taking it in turns to escort me home. And my dad would wait outside work whenever he could to drive me to where I parked my car.

The police said there was nothing they could do unless he hit me again and there were witnesses. I told them I was terrified that if he did hit me again I wouldn't survive the encounter. They still did nothing. It took well over 12 months from that terrible night before he stopped stalking me and moved back to the mainland. 20 years later I was still seeing his face in crowds and the fear would resurface. It hasn't happened for several years now so perhaps I have finally closed that terrible chapter of my life. I hope this post has helped me to finally let it go.